A break for 4 days

Just over two weeks ago my 10 year old daughter had her first IV Infliximab dose. It had been spoken about for 3 months but due to an ongoing flare increased symptoms & an MRI of intestines Infliximab was to be started. I had to go for a private walk, so my daughter couldn't see my worrie & tears. The Rhumatologists said its about quality of life & she felt this was now a medicine we needed to try. My daughter has had Stevens Johnson syndrome to a medication before so this is always a real worrie.

After 2 weeks in hospital her little body was still so ill. I was carrying her as her joints was so bad, she was struggling going to the toilet & only doing little pellets. Not to mention the massive headaches, bad. Left eye and a mouth full of ulcers & below. She is so amazing BUT she lost her will to live. What am I to say? What I did was tell her too not let this win... Fight. How bloody selfish am I. We lay on the bed & cried together. I can see how painful & shattering this is. But it's not me.

We are her parents, placing her on these medicines, in a hope for a better life. Freedome from pain. After 8 days we experienced it. Our daughter woke, walked out and said, "I think my new medie is working I feel great...." My heart leaped & I hugged her praying this lasts. It did for a full 4 days, she went to school for day 6 & 7 for the term. We heard laughter, saw a little run but best of all done with her brother. Unfortunately she woke with all symptoms back again. Saw the Rhumatologists who said it will be interesting to see after next dose.

That was last Friday. The treatment makes her feel terrible almost agitated & glases over. She had a massive headache, but is this Behcet's or treatment. I felt traumatized to watch her once again go through yet another bad feeling. Once home & the kids were in bed i sooked & sooked & took all night to stop. I hoped we were not creating a war in her body of hell.. Sounds rediculous but its been so stressful for such a long time. Yesterday still horrible, but today not bad. Fingers crossed she can have that break from BD ASAP. I think of the wonderful 4 days we had to keep my sad feelings away.

I have been reading all the blogs all morning and think you are all an inspirational. XO to you all.

6 Replies

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  • My dear, what a dreadful time for you and your family.

    There are other parents here who I expect will respond. Some of us have had this since we were children and our own parents went through the same thing. Fortunately now the disease is picked up earlier and there are more and better treatments, understanding and support.

    When a child is suffering, parents experience all sorts of emotions; fear, guilt, confusion etc, but hardly have time to process these feelings because they are having to make decisions, be strong for the child, support one another, cope with the physical and emotional needs of the child and everyone else affected, such as siblings and husband/wife.No wonder you feel so wretched.

    I think there is something very important that you need to take on board: YOU ARE NOT SELFISH. Ok, so you are not the one with the disease, but you ARE suffering, and you need support too. You are doing what you think is best for your daughter and that is all that can be asked of any parent. When you encouraged her to fight you were right there fighting with her. Going for a walk sounds like a great idea, there are times when we need to really let it all out and letting our children see this is probably not good for them, but at the same time, a cuddle and shared tears are important, children are not daft, they know when parents are hurting, it’s part of showing your love and understanding. Balance is the key.

    As you probably know, the disease can fluctuate and it can take a while to find the right medication and management regime. Getting there is tough for everyone. You are not creating a war in her body, there is a battle going on, there may be more to come – between the disease, the medication, her as a person. The reprieve you all enjoyed was a victory.

    YOU need support, your daughter needs support and sometimes it can help to get this from sources other than within your own family. If you don’t know already, the Society runs a help and support line where you can talk to people who understand what you are going through:

    behcets.org.uk/menus/main.a...

    They are also setting up-

    A “Network for younger members/parents of younger members – we have an informal parent group that provides telephone support to each other. It is also something we are trying to progress via the introduction of our junior member so we can understand where and how many children are affected in the UK. When we have a clearer picture of the situation, it is something we would be looking to our support workers to co-ordinate.” (http://www.behcets.org.uk/menus/main.asp?PI=310)

    There are support groups and a members registry where you can find people to meet up with, email, chat to on the phone – the Society can give you this information and you can leave your details with them and make it known you are willing to be contacted if you think that is something you would like to do.

    Please take this on board: You are not alone, you are not selfish, it is not ridiculous to shake and cry. You are a concerned parent who is doing the absolute best that she can for her child.

    Keep posting, there will always be someone here for you.

    You are doing an amazing job, I admire you for that..

  • I was told that during my first treatment, I would feel better for a few days, then worse until my next because the medication has not reached peak levels in my system. I was told that is why treatments are more frequent when I start.

    My schedule, and 0, 2 then 6 weeks is also what the remicaide website calls for.

    When is her next treatment?

  • Thank you for all the kind and encouraging words. I wasn't aware of the support group and will give it a go. I'm not sure what good I'd be to others but I'm happy to help any time. Tigerfeet you have made me feel in control of a crazy life.

    Kayhold. My daughter has had her first treatment just over 2 weeks ago then last Friday was 2nd then again in 4 weeks time. The treatments surly knocks her socks off. We are yet to see the joy of last weeks health and hope it returnes. My daughter is still on all her usual madicines but we are lowering the prednisone slowly, now on 20mg. Fingers crossed.

  • Unfortunately I have mor questions. Going to put it to all. Thanks Sarah-Lou.

  • Another option which the body fights less is Humira. This does the same job but is self-injecting so less traumatic and quicker (and less time off school). It is also fully human, where Infliximab (Remicade) is chimeric (part mouse antibody) so you do not get the blinding headaches or flu like reaction after. I know others her age if you want to be put in touch with the pediatric patients or their parents message me.

  • When you say you do not know what good you could be to others - let me explain what I meant; helping doesn't have to mean giving advice, it can be anything from a rant, which shows us that we are not alone in feeling that way, or a question about symptoms - which may inform us that we are not the only one with a particular symptom, a description of what we did on a particular occasion, such as going for a walk or eating a box of chocolates, it gives us ideas and all helps.

    It gives everyone an insight into how BD is for others, perspectives from families and friends as well as patients and often, even within a rant, there is a nugget of information that will be valuable to someone else.

    As for having more questions - that won't be any surprise to anyone here, we all have questions, whatever stage we are at. Ask away :)

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